PCPID Quarterly Meeting: November 19–20, 2008

Chairman Rhatigan reopened the session and pointed out that Dr. Mank was back on the phone. He then briefly discussed the proceedings that took place during Dr. Mank’s absence.

Dr. Mank was told that Ms. Roach would have comments coordinated with the sections in the existing draft by Monday. Dr. Mank requested that he have the comments by Friday instead. Ms. Roach said that she would send the rewordings as soon as she received them from members no later than Monday. Ms. Linda Starnes’ corrections will definitely not be in until Monday. However, he should receive some corrections Friday with which to start the rewording. Ms. Roach would not be sending anything after Monday.

Dr. Mank expressed a concern about the deadline. Ms. Roach assured him that she would get him the information in the area of Employment Support the next morning. She would have the information on Preparation to him as soon as Ms. Starnes got in front of a computer, which they would try to make that happen that day.

Mr. Cole thought he would be able to get his report to Ms. Roach by that evening. Ms. Roach thought she would be able to get the information out to Dr. Mank by no later than noon the next day.

For the benefit of Dr. Mank, the sub-committees briefly presented their conclusions again:

• Ms. Starnes asked if “through,” in the title of the Report, was meant to be capitalized. Ms. Roach said that she would look into the question and get that information to Dr. Mank the next day. The consensus of the Focus Group Members was that they wanted the word capitalized.
• Instead of putting “ID” in the report, Dr. Mank suggested that “intellectual disability” seems to follow better.
• A disclaimer needs to be copied from the 2008 PCPID Report and inserted into this draft of the report, explaining the usage of the term “mental retardation” or “MR.” Ms. Roach will email the 2008 Report to Dr. Mank so that he can make this correction. There is already a brief explanation of this usage at the beginning of the draft, where it talks about definitions used in the report, but that explanation is not believed by most of the Focus Group members to be sufficient.
• Disclaimers are also to be attached to each of the vignettes, so readers can understand that each of the featured individuals does have an intellectual disorder even if there are additional conditions mentioned. The Starbucks story may need to be excluded in this case because the individuals involved would prefer not to be identified as intellectually disabled. Dr. Mank will check with the people that know her family.
• Ms. Starnes observed that a formatting error should be corrected. In Section 4, the Summary section was listed at the end on page 31 after recommendations. However, in other sections of the Report, the summarizing came just prior to the Recommendations.
• Ms. Starnes brought up the previously mentioned issue on page 28 in the last sentence of the first paragraph that discusses the readiness of those with intellectual disabilities to work. She presented her rewording, and Dr. Mank said that he would have to look at it in the context of the paragraph. Ms. Roach and Dr. Mank will be in touch regarding this rewrite.
• Another issue on page 28 can be found under the “transition from school to employment” at the beginning of the second paragraph. They would prefer to simplify the sentence by saying “no less so for young people with intellectual disability” because not everyone goes all the way to age 21.
• Mr. Hollingshead also made another suggestion on the same page, a few sentences up. He felt that the word “all” should be deleted from the sentence that reads, “all individuals with intellectual disabilities are ready to work.” Ms. Starnes informed him that it had already been deleted.
• Ms. Starnes asked if anyone had researched whether youth with intellectual disabilities who receive post-secondary education are more likely to be competitively employed. Along the same lines, they might highlight the fact that youth with intellectual disability are perhaps even less likely to make it into post- secondary education than others. Dr. Mank informed her that youth with intellectual disabilities are included in broader studies, but are not disaggregated. Thus, they cannot yet be examined separately.
• The sentence on page 30 about the Higher Education Opportunity Act needed rewording. They might want to stress the limited amount of data available because the Higher Education Opportunity Act and the research data are both so new. In the next report, they may want to look at whether or not it made a difference to have these opportunities. Dr. Mank thought that the current point was to just get attention to the issue.
• Under Volunteering, in the middle of the first paragraph, there is a sentence talking about how volunteering can confer social, emotional, and even physical benefits consequently “being.” The word being needs to be removed.
• Titles and organizations were listed for the presenters in some of the draft, but were excluded in the latest draft. Since not all the presenters were mentioned in the reference section, they should list the name, the title, organization, and city/state of the presenters. Ms. Roach informed Dr. Mank that this information was available on the Open Forum Agenda and volunteered to email that document to him the next day. The presentation title still needs to be listed along with the other information.

Ms. Starnes gave examples of a few places that require changes:

• The References at the top of page 39 had a few lowercase “I”s that did not belong. This might be garbage data that got thrown in, a printing issue, or a messed up italics code. No problem existed in the electronic version. The same thing happened with question marks and URL listings.
• On page 7, under the definition of intellectual disability, in the fourth paragraph, near the middle of the paragraph, it refers to a list of syndromes as cited above when the citation is actually below.

Ms. Starnes will send a written report of her comments. Mr. Ollie Cantos offered only one suggestion:

• In the title, the proposition should not be capitalized. Ms. Zeppuhar suggested that they see if the PCPID staff had some kind of style manual to follow. Ms. Roach said that she did have a manual and would report her findings to Dr. Mank. Ms. Bazilio- Bellgrade thought the title looked better with a capital T.

Will Tienken gave the following comments on the Supports and Benefits section:

• There was a reference to the statement that was made in the Agency's recently reviewed strategic plan. Basically, it is a commitment to making Return to Work easier, and simplifying the rules. Mr. Tienken thought they should add a brief statement in order for the reference to make sense. He will send a few sentences to Ms. Roach early the next morning. In the first paragraph after the bullets on page 33, there is a place where it would fit into the Report. The key thing was to add a reference to the strategic plan being a new document and highlight it.
• They should lift one of the personal vignettes. The specific one to use is open to discussion. The vignette would be inserted inside the front cover as a way of personalizing the Report. Dr. Mank informed him that starting with a story before any other information suggests that the story is the most important thing.

Ms. Zeppuhar mentioned the fact that this Report will be the last one for the current President, but also the first Report seen by the new President. What should the President know, look at first, and focus on? The focus should definitely be on employment. He may start with an attitude that people with intellectual disabilities cannot be employed and need other kinds of support, but the Report may help that if it stresses the idea that they can be self-sufficient and have a job.

Ms. Roach pointed out that the Report will not automatically go to the new President. If that is what the Committee decides to do, they must transmit the request in the form of an Action Memo through the Secretary to the new President.

Ms. Zeppuhar asked if the Report becomes part of the public record, making it possible that the new President would see it. Ms. Roach said that it does become part of the public record, but thought it is unlikely that the new President would read it with all the items on his agenda.

Chairman Rhatigan said that they would discuss this further at some point.

Mr. Eric Cole cited the following four general recommendations from the Focus Group on Public Awareness:

1. Under Recommendation 10, add a bullet along the lines of “develop dissemination strategies to reinforce to the public sector the communication, information, and physical access standards in Section 255 of the Telecommunications Act and the Section 508 of the Rehabilitation Act.”
2. Cross-reference Recommendation 11 with the recent NCD Report on Transition.
3. On pages 5 and 7, consider revisiting the definition of “ID” and whether or not it is redundant. Some of the verbiage was the same on page 2.
4. On page 9, Recommendation 3, under the second bullet, “energy” is reference. It looks like this was meant to say education. It references DOE, but was meant to reference the Department of Education.

Mr. Hollingshead had one suggestion in the area of Research. He thought that, on page 12, the rhetorical tone should be lowered a little bit. In the third line, he wanted to omit the word “undeniable” where it said “we make the undeniable argument.” No one objected to this idea.

Chairman Rhatigan, once again, raised the issue of moving a vignette from the text to the inside of the front cover. He wondered if there was a way to have a positive success story at the front without focusing or the presumption of a focusing on that particular vignette as the scope of the entire Report.

Mr. Hollingshead thought that since the stories use only the first name, they are adequately nonspecific. These are clearly examples from which the Report is not necessarily extrapolated. In addition, these examples appear in neat boxes throughout the text. If they remain uniform, a viewer can easily flip through and see that the story at the beginning fits into this category. In Mr. Hollingshead’s opinion, starting with a story is a great idea.

Chairman Rhatigan called for an informal vote on the question, but before the voting commenced, Ms. Bazilio-Bellgrade added another solution to consider. They could add a lead-in sentence before the story, stating that this is one example of many which can be found in the text exemplifying the message of the Report. Mr. Hollingshead was concerned that her approach was a little too self-conscious and would detract from the rhetorical idea as a result.

Chairman Rhatigan again called for a vote on whether a vignette on the inside front cover would be a positive thing. The majority voted in favor, and the Chairman confirmed to Dr. Mank that they would go ahead and include a vignette in the inside cover.

Chairman Rhatigan felt the story with Dan and Microsoft was the most compelling. Dr. Mank planned to suggest the same story. The story will be featured in both the inside of the cover and in the text of the Report.

Ms. Sharman Word Dennis proposed the idea of featuring PCPID member Casey O’Holloran’s bio on the inside cover instead. He is employed, young, lives alone, and is on the Committee. Mr. Hollin supported this idea and made it a motion. The motion was seconded by Mr. Eric Treat.

Ms. Claudia Gordon reminded the Committee of concerns raised by Ms. Roach earlier and wondered about possible legal implications or a conflict of interest. Should the Committee look into the possibility first? Mr. Hollin saw no conflict of interest since there would be no economic benefit to Casey. His relationship with the Committee is pro bono, unless you consider the rate of pay we're getting as being worthy of a conflict of interest.

Mr. Tienken thought it was a great idea to use Casey’s story, and he asked that Dr. Mank write it out with the same tone as his other bios and put it on the inside cover.

Ms. Dennis suggested that Casey’s story could replace Courtney’s story since Courtney’s story had a problem.

Ms. Roach said that she would send Casey’s story to Dr. Mank.

Chairman Rhatigan asked if there was anymore discussion desired before the Committee was ready to vote on the topic. Ms. Starnes chose to continue the discussion. She wanted the vignette of the gentleman at Microsoft to have a mirror vignette on the back inside cover. This end piece would give some symmetry. One problem with this proposal, raised by Mr. Hollingshead, is that it would highlight two Down syndrome stories.

Chairman Rhatigan again asked if there was any further discussion needed. Dr. Banik related how he found Casey’s story very compelling. He felt it would also inspire others with intellectual disabilities to apply for membership in the PCPID.

Mr. Hollingshead thought that the story should be framed in the same way as all the other stories. That is, the Committee membership should not be mentioned explicitly and he should be referred to as just Casey. Mentioning his full name and position would diminish the value of the story as a teaser.

Ms. Bazilio-Bellgrade asked for clarification. Mr. Hollingshead was indeed suggesting that they not mention that Casey is a Member of the PCPID. Ms. Bazilio-Bellgrade disagreed with this proposal because she felt it was important to give examples of leadership and volunteering on boards. If it looks like they are talking about themselves, the material will not have the desired rhetorical punch. Maybe they shouldreturn to the idea of having the Microsoft story at the beginning because it needs a more generic story. Ms. Roach agreed with him.

For a vote, Chairman Rhatigan presented the motion on Casey’s story without the discussion on his Membership. This motion passed. He then proposed a second vote on whether to include the PCPID and a description in this account.

Mr. Cole proposed a different motion. He thought that they should let Dr. Mank work up the story first. When it is complete, they can decide which story would be best for the inside cover. Chairman Rhatigan thought the decision needed to be made right then because of time constraints. Mr. Tienken suggested that Dr. Mank could write up Casey’s story, culminating in with PCPID. When the story is printed on the cover, the part about PCPID could be left out. It would only be included in the text of the Report.

Dr. Mank inquired where Casey’s story would go in the Report. The story could be used if a replacement is needed for Corey or in addition to the three already present.

Ms. Roach expressed belief that it might be better to put the Microsoft story on the front cover and put Casey’s story on the back cover with the PCPID statement. However, it was suggested that it might be a problem to have two Down syndrome examples on the covers. Ms. Roach thought that people would not focus as much on the syndrome as they would on the impressiveness of the stories in the vignettes. This is important because impressing employers is the goal. Mr. Hollin felt that the frequency of Down syndrome cases compared with other syndromes warrants the use of two examples.

The Microsoft story will be put on the front cover and Casey’s story will be featured on the back.

Mr. Cole suggested that they might refer to Casey as an individual with an intellectual disability rather than having Down syndrome. However, Mr. Hollin felt that this was unnecessary. It was then proposed that his syndrome be specifically mentioned at the end of the story rather than at the beginning of the story.

Another motion was proposed. This motion was to supersede the previously approved motion and place Casey’s story on the back cover of the account.

The Microsoft story will go on the inside of the front cover and the Casey story will go on the back cover. Ms. Roach will get Judy’s write-up of Casey’s story which should be available shortly. She will pass that on to Dr. Mank. This plan was voted on, and there was a consensus.

Chairman Rhatigan asked if there were any further issues. Mr. Hollingshead wanted Casey’s story added somewhere in the text in addition to the back cover. Dr. Mank asked that he be able to see it first.

Chairman Rhatigan invited any further comments. There was no response.

Mr. Gordon inquired where the picture would be put in the report. It was suggested that the picture be put on the page with a description of the Committee. The intent was to put it up front. Mr. Gordon had no preference as to the placement. This will probably be featured somewhere on pages three, four, or five.